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My experience is that this does happen. My CA 19-9 rose from normal to 45 in April. My onc and I are really conservative, so even though that is fairly close to normal, he did a pelvic, chest and abdomen CT. The scan was clear. He asked me to come back in and repeat the marker in 6 weeks. My understanding is that inflammation and/or infection are the top reasons it could rise besides new cancer cells. I was not in active treatment at the time (which can also cause fluctuations).
In June, my tumor marker was 165. When we repeated the CT, I had two visible mets--one in my liver and one in my peritoneum. Prior to the CT, I asked my onc if the CT was clear this time if I could have a PET to get another perspective. He agreed, but said that PETs can be helpful and also have a high false positive return. (I actually know this from personal experience as I have had several PETs over the years and have had to have follow-up scanning that has shown nothing.)
This is not to scare anyone. It's just what happened--the tumor marker preceded what was visible on scan by 6 weeks. And the waiting was really difficult. I would be fine and then I would have a total panic attack. During that time, I was actually still recovering from a really bad chemo complication, and I was so happy just to be feeling better. Believe it or not, it got easier once we actually knew what we were dealing with. I think the waiting and not knowing is the worst.
Good luck everyone! There are plenty of people here to share the opposite
story where the markers fluctuate for no apparent reason, and there's no
cause to worry. That is my wish for you. Jill
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